ASD : Further Thoughts on Inclusion
(Junior or Secondary School, and University)
These summaries return to the theme of assisting children and young people to achieve meaningful academic and social inclusion at school and in higher education.
The common principles concern the sharing of information, focusing upon abilities rather than upon disabilities, and planning ahead thus to anticipate and to avert or reduce difficulties associated with individual profiles of strengths and weaknesses and anxieties.
M.J.Connor March 2007
Acceptance and Friendships in Mainstream Classes
The guidelines concerning provisions for children with ASD who attend, or who are about to attend, mainstream schools set out by Boutot (2007) begin with a recognition of the major issue ….. namely that everyone needs friends and to experience a sense of belonging, but that a core feature of ASD is the difficulty in making and maintaining social communication and relationships.
While there is considerable individual variation in the precise nature and severity of the needs of children with ASD, there are likely to be common problems in respect of reading social signals, starting and sharing a conversation, and interacting with peers. There might also be the further problems of restricted interests and of stereotyped or repetitive behaviours, and of idiosyncratic language style, which would further challenge the ease of peer acceptance.
Nevertheless, Bouton cites existing evidence that the opportunity to work and interact with typically developing peers is associated with enhanced behavioural, communicative and social skills among children with ASD.
What matters is that true inclusion and positive relationships will not arise incidentally from simply arranging for the children with ASD to attend a mainstream school. Rather, there is a requirement that the mainstream peers (and staff) are fully accepting of the child with special needs, and this will involve pre-planning and preparation.
To emphasise the potential complexity of promoting inclusion, Bouton refers to the factors determining how typically-developing children perceive each other and on what basis relationships are established.
Firstly, it seems that individuals have a preference for other children who are much like themselves in terms of their ability, language, behaviour, and dress …. (with implications for the value of school uniforms, one might say).
It appears, too, that children also lean towards those others towards whom they perceive teachers to have positive feelings.
The final and important point is that children develop a preference for children with whom they spend significant amounts of time. Proximity is a key factor.
Popularity of a child seems largely to be a matter of positive social and communicative skills although there are gender differences in that girls who are able academically, and boys who are able in sports and games, are likely to be preferred. The less popular students are those with the poorer social skills or the capacity to work cooperatively with others, who lack the academic or sporting abilities, and whose behaviour is seen as inappropriate.
Bouton comments that the particular difficulties of the child with ASD will present challenges for acceptance by peers and for access to friendship circles. There is a risk lest the disability (which is only one aspect of the child’s total personality) will assume exaggerated significance and stand in the way of full admission to the mainstream group. She acknowledges that efforts towards social inclusion have not always been successful and that evidence exists that children with disabilities are not so readily accepted by peers as those with no disabilities.
The result is that a child who has any special needs may well tend to spend most of his or her time with children who have similar needs, although evidence is mixed about the social opportunities and the degree of acceptance observed among children with and without disabilities.
Her own earlier study (Boutot and Bryant 2005) points to the importance of mainstream opportunities given that, while acceptance is not the same as actual friendship, children with disabilities in inclusive classrooms were seen to present as true members of a meaningful social group.
It is repeated that it is the social skill anomalies or deficits among children with ASD which are a significant source of inhibited acceptance by other children.
Reference is made to some specific issues likely to interfere with relationships, such as atypical or echolalic speech, an insistence upon sameness, pre-occupations, perseverative behaviours, little recognition of others’ feelings, and lack of eye contact or of social reciprocity. No single aspect of behaviour or “style” will have much impact, but the combination of features, or severity of such characteristics, will (negatively) influence acceptance.
The implication is for the planning of strategies by which to enhance the probability of acceptance and friendship.
The first piece of advice concerns the careful choice of school and class setting where the teaching staff share, or at least appreciate, the philosophy behind social inclusion. Observation of the classteacher’s general style would be usefully included within planning to determine the extent to which use is made of positive reinforcement, multisensory and multi-modal approaches, the extent to which children work in small groups, clarity of expectations and instructions, and time for practice and for consolidation of new material.
One would also assess the physical environment in terms of the level of sensory distractors such as poor lighting, or extraneous noises; and whether the acoustics are appropriate.
Are the children at ease with group working, and with supporting each other ?
In other words, which school/class would best fit the child, and where would the child best fit the class ? Admission to which class/school would involve the least modification or disruption ?
Turning to the matter of scheduling, it is recognised that the timetable may require some modification to allow for access to individual or small group work, or to specific support activities (such as speech therapy).
The advice is to keep to as few as possible occasions when the individual has to leave the classroom, and/or to manage the occasions such that leaving, or returning to, the classroom coincide with natural transitions like the start or end of break (so that they are less noticed by the other members of the class).
It is further suggested that therapeutic work is carried out, as far as possible, in the school setting, and support work in the class setting, to minimise the need for shifts in the normal routines.
Support could include anything from a printed copy of the teachers’ notes to the continual availability of a classroom assistant. The general principle is to offer support in as unobtrusive a manner as possible thus not to cause the child or young person with ASD to stand out from the rest of the class.
Therefore, a classroom assistant would usefully monitor events from a discrete distance and become directly involved only when necessary while also being available to assist other students … ie being seen as a supporter to the class as a whole rather than to the individual with ASD specifically.
Assisting the class teacher would involve, as necessary, the provision of background information about ASD generally and about the needs of the child in question particularly. Support staff, such as advisory teachers and outreach specialists, would usefully provide ongoing suggestions about targets and strategies plus actual resources as required.
It is appropriate not to allow any “mystique” to develop about the methods of managing and teaching children or young people with ASD, but to be willing to share information and ideas.
Equally important is raising awareness among the peer group although it is acknowledged that there might be issues about confidentiality … perhaps a function of the age of the class and the precise nature and level of the disabilities of the individual with ASD. It is suggested, for example, that in the senior stages of schooling, it may not be appropriate to draw attention to the student with ASD unless he or she shows disruptive characteristics or requires support that would be only too noticeable.
Among younger age groups, it may
be reasonable to arrange a meeting of the class where the teacher or another
professional describes the nature of ASD and the particular style of the child
who is about to join the class (or who has always been in the class but whose
needs are beginning to set him or her apart from the norm).
It is recommended strongly that the emphasis in such a discussion is upon what the individual is good at, likes, is interested in, and how (s)he is similar to everyone else in the group (and not upon the things that are found difficult or which make him or her different from the rest of the class).
Reference would also be made to the appearance of any special resources that will be used thus to reduce curiosity, while also mentioning any unusual and potentially intrusive behaviours.
Some ideas would be shared with the class about how to talk and interact with the individual with ASD; and, in the case of someone transferring from a specialist class/school to a mainstream class, arrangements should be made to meet a small group of the children (s)he would be working with in that mainstream class. The group in question would ideally include the more popular members of the class.
(This latter suggestion is held to be particularly appropriate for senior school students who do not operate in one single class but who may be dispersed among a range of sets or groupings across different subjects).
In preparing the child or young person for school admission or for transfer from one setting to another, it is advisable to address skill deficits in advance thus to reduce the risk of inhibiting social progress. This could well include the direct teaching and practising of self management or social and communication skills.
Admission or transfer will be aided by advance visits and/or videotapes of the mainstream class, plus the use of social stories by which to prepare for the move and to provide a frequent reminder about expected (social) behaviours.
Family support (and bi-directional communication between home and school) is seen as important. Prior to school admission or transfer, a shared meeting would be valuable to begin the process of contact and information-sharing.
The general principle implied in much of the foregoing is to take nothing for granted, but to seek to anticipate events within an overall policy of maintaining a consistent routine and structure for the school day.
Bouton concludes that positive social relationships are very important for the quality of day to day life for children, young people, and adults. The implication, therefore, is to provide for children and young people with ASD the opportunity to establish relationships similar to those enjoyed by typically developing peers (plus ongoing support and advice by which to maximise the stability of the relationships).
Moving to Secondary School
In addition to the characteristic features of impairment in social communication, language, and flexibility of thinking, children with ASD frequently experience high levels of anxiety particularly when facing the prospect of some (major) change in their lives.
This was the starting point for the work of Watson et al (2006) who recognised the potential for anxiety (and, presumably, for regression in existing levels of social competence and confidence) when children with ASD face the transition from junior to secondary school. This can be a challenging time for any child facing the need to attune to a very different and complex setting, new demands, and different peer groups, as well as a range of teachers with their own individual teaching styles and expectations. However, with preparation for the impending changes and ongoing support, it is believed that anxiety can be minimised and the probability of emotional or behavioural difficulties reduced.
The study completed by these present authors focused upon a sample of 12 children with a formal diagnosis of ASD, initially identified while attending a language unit in a local clinic, and due to enter mainstream secondary schools at the start of the next academic year.
In the early Summer, the secondary schools were approached for information about the tutors and tutor groupings, school rules, a map of the school, details of school clubs, term dates, and any other information deemed relevant. The school staff were provided with information about the children’s diagnoses and the proposed intervention.
The children were allocated to one of three groups which met on four consecutive half days, for two hours each day, during the Summer holiday. The children were then aged around 11 years, and the groups were staffed by a speech and language therapist, two nurses, and a clinical psychologist.
Parents were invited to attend the first group session, and to share any concerns with the staff, and were also invited to attend the final (feedback) session.
The format for the group activities involved a baseline (questionnaire) measure of confidence about given areas concerned with getting to school, school organisation, and interactions. Parents were given the same questionnaire so that their views could be added.
Issues of potential concern included ….
These areas were subject to discussion, role play, etc. during the group sessions.
The sessions were organised as follows ….
All the issues that could be a source of concern, and the strategies for dealing with them, were summarised in a booklet of which each child kept a copy.
Information about the issues listed as likely sources of concern was sent to staff in the secondary schools along with a copy of the booklet, and further details about the specific style or weaknesses of the children.
The secondary schools were visited by members of the support teams during the early part of the first term to check how the children were coping and to discuss any matters causing concern; and the children attended a follow up group during the Christmas holiday to review experiences and any anxieties, and to re-complete the confidence questionnaire.
The review data indicated that 8 of the 12 children were more confident about finding their way around the school; 8 were more confident about issues surrounding organisation such as getting to lessons on time; and 10 children were more confident about homework. However, 9 children reported lower confidence about joining clubs.
The parental responses immediately after the groups sessions showed that 8 parents were more confident about the children having the right equipment for each day; 9 were more confident about the children getting to lessons on time and dealing with teasing and bullying; and 10 parents were more confident in the children’s willingness or ability to ask for help from other students.
After the first term, the parental responses were described as showing a generally increased confidence in the children’s capacity to manage most aspects of the secondary school, including travel, having the right equipment and arriving at lessons on time, seeking help, doing and handing in homework, participating in sports and games, and working independently.
On being asked initially what they would change about school if they could, the children’s responses included having more playtime (which, one might say, is an encouraging sign in itself), having less or no homework, or not to have to go to school. Some suggestions included staying in the same class all the time to avoid confusion, and not having a school uniform.
Parental wishes tended initially to refer to a smaller setting and one where their children would be safe and helped to establish friendships; and for there to be access to structure and support during lessons and break, along with regular staff training about ASD.
After the first term, the children still suggested more break time and less homework, and wanted an end to teasing/bullying. Parents felt that teachers could make more allowances for the children’s specific difficulties, and that more communication between home and school would be helpful. They referred also to the need for more friendships and for an end to any teasing or bullying.
Meanwhile, the staff reported few concerns (and those expressed were about the issue of friendships). They reported that the information provided had been helpful, and were reminded to ensure that the information was shared among all the staff. Interest was commonly expressed in the offer of training in the nature and management of ASD.
In their summary and conclusion, the authors argued that the group sessions had been influential in preparing the children for the secondary school transfer and the associated shifts in organisation and expectations.
However, a real increase in confidence levels was only observable following a period of actual experience in the secondary school …. (perhaps, one might say, with implications for increasing the amount of time spent in visits to the secondary school during the preceding term in order more fully to attune to the atmosphere and the organisation).
By contrast, the parents appeared more reassured at the end of the group sessions by the availability of the strategies and the links established with the school (and by the opportunity to share and discuss concerns with other parents facing the same circumstances).
After a term, the parents showed increased confidence. This was attributed to their being able to see how their children were being directly supported.
Communication with the school staff and feedback were significant in that greater parental reassurance was associated with their degree to which they were involved and informed.
The authors emphasised the issue of communication by holding that the main benefits of this initiative were associated with the links established between home, school, and clinic thus to share ideas, concerns, and advice.
A follow-up after a year indicated that all the children appeared settled with no reports of behavioural problems or of anxiety/refusal in respect of attending school. Staff were reported to have developed greater awareness of ASD and its various manifestations, and were proactive in seeking to address needs and in seeking advice from mental health professionals.
Early liaison and planning were seen as the key, enabling the secondary school staff to prepare for the transition of the children with ASD by access to information about their needs and idiosyncratic styles, raising the children’s awareness of the different circumstances that will be experienced, and reassuring parents about the school staff’s awareness of their children’s needs and of responsiveness to concerns.
Transition to University
The general theme expressed in the work of Martin (2006) is that significant numbers of individuals with ASD will succeed in gaining a university place, with possible implications for staff anxieties or feelings of not being ready to cope. Martin believes that such reactions are a result of the considerable publicity afforded of late to autistic spectrum disorders, leading to the association of the ASD label with all of the negative characteristics and with severe symptomatology.
The reality is that students with ASD who enter university are likely to cope at least adequately or better if given appropriate support ….. and Martin’s notes provide a summary of the likely needs and the means by which to reduce or compensate for them.
She begins by stressing the range of needs that may be subsumed within a spectrum disorder such that, in some cases, a formal diagnosis or access to specific support will not be necessary, and one needs to be sensitive in determining at which point the observed needs warrant highlighting among the relevant staff and where support for at least some aspects of student life will be required.
Ideally, in such cases, the needs will have been communicated before the beginning of the university term with support systems or principles established in advance.
There is an issue about disclosure of an ASD diagnosis especially given the relative subjectivity of the diagnostic process (reinforced, one might note, by recent debate whether an ASD label is applied too readily to individuals who happen to appear somewhat idiosyncratic in their social style or not to be at ease in group settings). Some students may be happy to be so-recognised, others may be more sensitive about their being perceived as different.
In any event, Martin cites recent legislation to the effect that informed consent must be obtained from a student before information can be shared with other people.
(The present writer - MJC - has worked with a secondary school student who has been given a diagnosis of Asperger Syndrome, and the dilemma about whether or not to discuss this label has been reduced by the pupil’s initiation of this topic, but also by adhering to the principle that, whether a specific diagnostic label is applied or not, or shared or not, one can usefully focus upon actual behaviours and those settings where social difficulties or overtly negative behavioural reactions are most likely. The Asperger label, like a label of Dyslexia or ADHD, for example, provides a general reminder for all concerned about where the individual’s difficulties are likely to be demonstrated.)
The first “risk” surrounding ASD, described by Martin, is that of potential anxiety or feelings of insecurity in the student with ASD that will be generated if routines are not clear or if anticipated events are subject to unpredictable change. The moral is to ensure the provision of a clear timetable and a shared understanding that any alterations will be communicated explicitly to the student in good time.
(This kind of advice illustrates the further principle running through Martin’s paper that a medical model of ASD is not helpful. One would not set out somehow to change the student or to make him or her ordinary because the ASD characteristics will always be there; instead one sets out to modify the circumstances and environment in order to take account of the ASD style and to reduce the probability of evoking anxiety or insecurity etc.. In addition, there is a need to highlight the positive skills and capacities of the student as much as, or more than, the weaknesses.)
With regard to these strengths, it may be the case that, especially by the stage of higher education, the student has a commitment to a given subject area and an already considerable body of knowledge, with the probability of a willingness to devote much time to assignments and ongoing study (and correspondingly less time to social pursuits) alongside a capacity to adopt an individualistic perspective upon shared topics.
(This situation may be seen as not like the school experience where an individual cannot escape from the group and is expected to pursue a whole range of subjects when he or she may see little instrumental purpose in, nor gain any interest from, some of those subjects.)
Martin goes on to stress that greater potential problems will, inevitably, be associated with social situations and social interactions, given the core nature of ASD.
Friendships may be limited or absent, with the additional risk of some exploitation from others; and it is acknowledged that ASD style, such as limited eye contact or failure to read non-verbal signals or idiosyncratic language usage, can cause the individual with ASD to appear socially awkward.
The language issues may include a contrast between apparently good expression but some limitations in comprehension including a difficulty with humour or a tendency to take things literally. Further, the individual may not have the language or the vocabulary by which to express feelings plus an uncertainty about when or how to seek help. (One practical implication in classes is to provide back up notes, or to use visual cues and illustrations).
It may be difficult to intervene in informal settings, but the advice for staff is to focus upon clear and unambiguous language both in classes and elsewhere, thus to minimise the risk of any confusion. The understanding of instructions for assignments or assessments should be checked thus to pre-empt any uncertainty; and the student directly brought in to group discussions via direct and specific questions (along with discrete prior advice, and regular reminders, about keeping to the point and not seeking to dominate group working or to interrupt others).
(This above kind of direct advice is likely to be viable given the growing evidence that individuals with ASD may not automatically consider social cues or read the feelings of others, but can respond to direct advice, guidance, and cues about specific situations.)
Martin does emphasise, however, the discrete aspect of the advice giving, or of the pointing-out of behaviours which threaten the ease of inclusion of the student with ASD, since she regards it as a common myth that individuals with ASD do not experience embarrassment.
She goes on to suggest the desirability of assurances from staff that any concerns expressed by other students will be treated with an appropriate level of sensitivity and confidentiality; and that any reference to behaviours attributable to ASD would only be made in discussion with another student or group of students if the individual concerned has agreed a way in which such information can be shared.
Similarly, direct advice may be needed to ensure that the student with ASD does cover all aspects of the course and does not devote all energies to those aspects in which there is a particular interest. It may need to be acknowledged that competence in a subject may require exposure to material which is necessary but less than exciting ….. (some Psychology students might use the example of that element of their course dealing with statistical significance of observed data and the application of analyses of variance) …. and one would make the point that this material needs to be covered to a given standard if the desired qualification is to be gained (ie one provides an instrumental purpose).
Turning to social and emotional issues, Martin recognises that low self esteem or anxiety, or even depression, can be observed among young adults with ASD, and that such feelings may be increased as a result of moving away from home and from all that is familiar …. although students with ASD will vary in their level of contentment with their own company and in their need or wish for interactions.
The suggestion is for enlisting support to help the student get through the first week or so, including how to find out about clubs and societies given that regular recreational opportunities via organised activities may go some way towards meeting the social/interactional needs.
Further, it is suggested that the student is equipped with computer facilities thus to ensure e-mail access as a means of delivering information or reminders about shifts of routine, and of maintaining contact with family and home-area friends.
A cancellation of a lecture, for example, could be alarming of the student did not have prior notice (either via-e-mail or via a personal note).
The principle continues to be that of taking nothing for granted.
Meanwhile, direct advice may be necessary about social interactions and about considering the needs of others living in a communal setting. Advice might include not taking over the whole of a shared space, while also, as appropriate and agreed, allowing fellow students some awareness of ASD and likely style to ensure that certain idiosyncracies (eg some mild obsessionality about how belongings are organised) are not seen as a problem. If there is no impact upon anybody else, various behaviours can be safely tolerated and taken for granted.
It is also suggested that sensory overload could be a problem with, for example, the college refectory a likely source of over-stimulation perhaps evoking physical or psychological withdrawal and reinforcing the sense of difference of the individual with ASD (and inhibiting social inclusion). The moral is to help the individual select a place in a quiet corner or to time his visits during a less busy time.
The overall implications involve the availability of someone who can monitor progress and provide the ongoing advice and reassurance, acting as a first point of contact, so that the student can be assisted to establish a routine for the day to day demands, not just of academic work but of practicalities like shopping.
(One might also predict that the student with ASD would settle more readily in a single campus setting where lecture rooms, common rooms, residential facilities, etc, are all on the same site.)
Martin concludes by citing a series of questions or considerations by which to plan ahead on the part both of the student him- or herself and of DSA officers or anyone likely to be working with the student.
To begin with, does the institution present itself as positive towards students with special needs, and with an understanding of Asperger Syndrome ?
Before entry to the college, there is a need for transitional planning in order that the student can become familiar with the campus and the residential setting. The suggestion is that a gap year could be helpful in that university entry could be organised on the basis of known examination results and with time for planning to be completed by DSA staff and for visits to be made in advance.
Given the student’s agreement, does the person completing the DSA assessment liaise with the appropriate staff at the university thus to ensure that the arrangements made are realistic and that the support will meet the needs ?
Does the disability officer (named person) at the university continue to monitor events and to meet the student to determine how to share information with staff generally, and do the monitoring and advice extend beyond academic issues to include help for independent living skills ? Is staff training adequate and anticipatory and does it extend to all staff including the residential services’ team ?
Will a named person from the university be available to communicate with the student during the holiday prior to university admission, to provide general information and to answer any questions or concerns, and specifically to provide details about arrangements for the first day or two ?
With regard to the early days of attendance, the first consideration concerns the generation of a clear timetable for the student as quickly as possible in order to enable a sense of security about where to be, when, and for what.
There is the further suggestion of planning some regular recreational activities as rapidly as possible, helping the student to identify clubs and societies which will provide a social timetable.
The student may also need help in making practical arrangements like signing on with a local doctor, together with direct advice about keeping up with course commitments including, where necessary, a tactful but firm reminder of what is required to pass elements of the course.
While respecting the student’s wishes about disclosure of an Asperger diagnosis, can the named person provide staff with advice and support ? The general pattern might best involve a kind of problem-solving approach by which to discuss how to deal with specific issues which arise or could arise …. within which transitions from one element of the course to another might need planning, along with ensuring that any changes (such as modifications to the timetable or the approach of examinations) are heralded well in advance.
In all this, can one be sure that the support arrangements are fully understood by the student, and that they are continually reviewed and modified if necessary ? Does the student know what to do and where to go if there is some problem or concern ? Is there a clear system for communication ?
Martin’s final comments re-emphasise the matter of being ready to support a student with Asperger Syndrome with staff aware of the reality, despite the relative invisibility, of the needs in question, and willing to make small adjustments to their style in order to maximise predictability and routine.
* * * * * *
M.J.Connor March 2007
Boutot E. 2007 Fitting in : tips for promoting acceptance and friendships for students with ASD in inclusive classrooms. Intervention in School and Clinic 42(3) 156-161
Boutot E. and Bryant D. 2005 Social integration of students with autism in inclusive settings. Education and Training in Developmental Disabilities 40(1) 14-23
Martin N. 2006 Strategies which increase the likelihood of success at university of students with Asperger’s syndrome. Good Autism Practice 7(2) 51-60
Watson A., Hughes M., and Sungum-Paliwel R. 2006 Enabling the transition of children with autistic spectrum disorders into secondary school. Good Autism Practice 7(2) 23-36
© Mike Connor 2007.
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